The Alzheimer's Disease Neuroimaging Initiative‐4 (ADNI‐4) Engagement Core: A culturally informed, community‐engaged research (CI‐CER) model to advance brain health equity
INTRODUCTION The Alzheimer's Disease Neuroimaging Initiative‐4 (ADNI‐4) Engagement Core was launched to advance Alzheimer's disease (AD) and AD‐related dementia (ADRD) health equity research in underrepresented populations (URPs). We describe our evidence‐based, scalable culturally informe...
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| Veröffentlicht in: | Alzheimer's & dementia 2024-12, Vol.20 (12), p.8279-8293 |
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| creator | Rivera Mindt, Mónica Arentoft, Alyssa Calcetas, Amanda T. Guzman, Vanessa A. Amaza, Hannatu Ajayi, Adeyinka Ashford, Miriam T. Ayo, Omobolanle Barnes, Lisa L. Camuy, Alicia Conti, Catherine Diaz, Adam Easter, Bashir Gonzalez, David J. Dotson, Yolanda Graham Hoang, Isabella Germano, Kaori Kubo Maestre, Gladys E. Magaña, Fabiola Meyer, Oanh L. Miller, Melanie J. Nosheny, Rachel Park, Van M. Ta Parkins, Shaniya Thomas, Lisa Renier Strong, Joe Talavera, Sandra Verney, Steven P. Weisensel, Trinity Weiner, Michael W. Okonkwo, Ozioma C. |
| description | INTRODUCTION
The Alzheimer's Disease Neuroimaging Initiative‐4 (ADNI‐4) Engagement Core was launched to advance Alzheimer's disease (AD) and AD‐related dementia (ADRD) health equity research in underrepresented populations (URPs). We describe our evidence‐based, scalable culturally informed, community‐engaged research (CI‐CER) model and demonstrate its preliminary success in increasing URP enrollment.
METHODS
URPs include ethnoculturally minoritized, lower education (≤ 12 years), and rural populations. The CI‐CER model includes: (1) culturally informed methodology (e.g., less restrictive inclusion/exclusion criteria, sociocultural measures, financial compensation, results disclosure, Spanish Language Capacity Workgroup) and (2) inclusive engagement methods (e.g., the Engagement Core team; Hub Sites; Community–Science Partnership Board).
RESULTS
As of April 2024, 60% of ADNI‐4 new in‐clinic enrollees were from ethnoculturally or educationally URPs. This exceeds ADNI‐4's ≥ 50% URP representation goal for new enrollees but may not represent final enrollment.
DISCUSSION
Findings show a CI‐CER model increases URP enrollment in AD/ADRD clinical research and has important implications for clinical trials to advance health equity.
Highlights
The Alzheimer's Disease Neuroimaging Initiative‐4 (ADNI‐4) uses a culturally informed, community‐engaged research (CI‐CER) approach.
The CI‐CER approach is scalable and sustainable for broad, multisite implementation.
ADNI‐4 is currently exceeding its inclusion goals for underrepresented populations. |
| doi_str_mv | 10.1002/alz.14242 |
| format | Article |
| fullrecord | <record><control><sourceid>proquest_pubme</sourceid><recordid>TN_cdi_pubmedcentral_primary_oai_pubmedcentral_nih_gov_11667532</recordid><sourceformat>XML</sourceformat><sourcesystem>PC</sourcesystem><sourcerecordid>3119723999</sourcerecordid><originalsourceid>FETCH-LOGICAL-c3062-dfb02c5c9da45778352d8a24900a5f9e30b785f71b511a426eb02fd24749c653</originalsourceid><addsrcrecordid>eNp1kdFu0zAUhiMEYmNwwQsg39FKdLMdO6m5QVFWoFI1JNQrbizHOWmMnHizk6Luao-wd-GNeBLcdVRwwZWP5O98x8d_krwm-JxgTC-UvT0njDL6JDklnNMZp7l4eqwzfJK8COE7xgzPCX-enKSCMZxjepr8XLeACnvbgunAvw3o0gRQAdAVjN6ZTm1Mv0HL3gxGDWYLv-7uGZoUl1fLfTVFi36jNtBBP6DSeXiPCqRHO4xeWbtDpm-c76B-h7TrujFadrENHnpq5CGO8rpFk3JvKxdfp6hzNVg0OKTqreo1oMor06MWlB1aBDdjVLxMnjXKBnj1eJ4l64-Ldfl5tvryaVkWq5lOcUZndVNhqrkWtWI8z-cpp_VcUSYwVrwRkOIqn_MmJxUnRDGaQeSbmrKcCZ3x9Cz5cNBej1XcQccd41by2sdf8TvplJH_3vSmlRu3lYRkWc5TGg2TR4N3NyOEQXYmaLBW9eDGIFNCRE5TIUREpwdUexeCh-Y4h2C5D1nGkOVDyJF98_fDjuSfVCNwcQB-GAu7_5tksfp2UP4GPfC2fg</addsrcrecordid><sourcetype>Open Access Repository</sourcetype><iscdi>true</iscdi><recordtype>article</recordtype><pqid>3119723999</pqid></control><display><type>article</type><title>The Alzheimer's Disease Neuroimaging Initiative‐4 (ADNI‐4) Engagement Core: A culturally informed, community‐engaged research (CI‐CER) model to advance brain health equity</title><source>MEDLINE</source><source>Wiley Online Library Open Access</source><source>Wiley Online Library Journals Frontfile Complete</source><source>PubMed Central</source><source>PubMed Central Open Access</source><creator>Rivera Mindt, Mónica ; Arentoft, Alyssa ; Calcetas, Amanda T. ; Guzman, Vanessa A. ; Amaza, Hannatu ; Ajayi, Adeyinka ; Ashford, Miriam T. ; Ayo, Omobolanle ; Barnes, Lisa L. ; Camuy, Alicia ; Conti, Catherine ; Diaz, Adam ; Easter, Bashir ; Gonzalez, David J. ; Dotson, Yolanda Graham ; Hoang, Isabella ; Germano, Kaori Kubo ; Maestre, Gladys E. ; Magaña, Fabiola ; Meyer, Oanh L. ; Miller, Melanie J. ; Nosheny, Rachel ; Park, Van M. Ta ; Parkins, Shaniya ; Thomas, Lisa Renier ; Strong, Joe ; Talavera, Sandra ; Verney, Steven P. ; Weisensel, Trinity ; Weiner, Michael W. ; Okonkwo, Ozioma C.</creator><creatorcontrib>Rivera Mindt, Mónica ; Arentoft, Alyssa ; Calcetas, Amanda T. ; Guzman, Vanessa A. ; Amaza, Hannatu ; Ajayi, Adeyinka ; Ashford, Miriam T. ; Ayo, Omobolanle ; Barnes, Lisa L. ; Camuy, Alicia ; Conti, Catherine ; Diaz, Adam ; Easter, Bashir ; Gonzalez, David J. ; Dotson, Yolanda Graham ; Hoang, Isabella ; Germano, Kaori Kubo ; Maestre, Gladys E. ; Magaña, Fabiola ; Meyer, Oanh L. ; Miller, Melanie J. ; Nosheny, Rachel ; Park, Van M. Ta ; Parkins, Shaniya ; Thomas, Lisa Renier ; Strong, Joe ; Talavera, Sandra ; Verney, Steven P. ; Weisensel, Trinity ; Weiner, Michael W. ; Okonkwo, Ozioma C. ; Alzheimer's Disease Neuroimaging Initiative ; the Alzheimer's Disease Neuroimaging Initiative</creatorcontrib><description>INTRODUCTION
The Alzheimer's Disease Neuroimaging Initiative‐4 (ADNI‐4) Engagement Core was launched to advance Alzheimer's disease (AD) and AD‐related dementia (ADRD) health equity research in underrepresented populations (URPs). We describe our evidence‐based, scalable culturally informed, community‐engaged research (CI‐CER) model and demonstrate its preliminary success in increasing URP enrollment.
METHODS
URPs include ethnoculturally minoritized, lower education (≤ 12 years), and rural populations. The CI‐CER model includes: (1) culturally informed methodology (e.g., less restrictive inclusion/exclusion criteria, sociocultural measures, financial compensation, results disclosure, Spanish Language Capacity Workgroup) and (2) inclusive engagement methods (e.g., the Engagement Core team; Hub Sites; Community–Science Partnership Board).
RESULTS
As of April 2024, 60% of ADNI‐4 new in‐clinic enrollees were from ethnoculturally or educationally URPs. This exceeds ADNI‐4's ≥ 50% URP representation goal for new enrollees but may not represent final enrollment.
DISCUSSION
Findings show a CI‐CER model increases URP enrollment in AD/ADRD clinical research and has important implications for clinical trials to advance health equity.
Highlights
The Alzheimer's Disease Neuroimaging Initiative‐4 (ADNI‐4) uses a culturally informed, community‐engaged research (CI‐CER) approach.
The CI‐CER approach is scalable and sustainable for broad, multisite implementation.
ADNI‐4 is currently exceeding its inclusion goals for underrepresented populations.</description><identifier>ISSN: 1552-5260</identifier><identifier>ISSN: 1552-5279</identifier><identifier>EISSN: 1552-5279</identifier><identifier>DOI: 10.1002/alz.14242</identifier><identifier>PMID: 39440702</identifier><language>eng</language><publisher>United States: John Wiley and Sons Inc</publisher><subject>Aged ; Alzheimer Disease - diagnostic imaging ; Alzheimer Disease - ethnology ; Alzheimer's disease ; Brain - diagnostic imaging ; Brain - pathology ; cognitive aging ; Community-Based Participatory Research ; community‐engaged research ; cultural humility ; dementia ; diversity ; external validity ; Female ; generalizability ; health disparities ; Health Equity ; Humans ; inclusion science ; inclusive participation ; Male ; Neuroimaging ; underrepresented populations</subject><ispartof>Alzheimer's & dementia, 2024-12, Vol.20 (12), p.8279-8293</ispartof><rights>2024 The Author(s). published by Wiley Periodicals LLC on behalf of Alzheimer's Association.</rights><rights>2024 The Author(s). Alzheimer's & Dementia published by Wiley Periodicals LLC on behalf of Alzheimer's Association.</rights><lds50>peer_reviewed</lds50><oa>free_for_read</oa><woscitedreferencessubscribed>false</woscitedreferencessubscribed><cites>FETCH-LOGICAL-c3062-dfb02c5c9da45778352d8a24900a5f9e30b785f71b511a426eb02fd24749c653</cites></display><links><openurl>$$Topenurl_article</openurl><openurlfulltext>$$Topenurlfull_article</openurlfulltext><thumbnail>$$Tsyndetics_thumb_exl</thumbnail><linktopdf>$$Uhttps://www.ncbi.nlm.nih.gov/pmc/articles/PMC11667532/pdf/$$EPDF$$P50$$Gpubmedcentral$$Hfree_for_read</linktopdf><linktohtml>$$Uhttps://www.ncbi.nlm.nih.gov/pmc/articles/PMC11667532/$$EHTML$$P50$$Gpubmedcentral$$Hfree_for_read</linktohtml><link.rule.ids>230,314,723,776,780,881,1411,11541,27901,27902,45550,45551,46027,46451,53766,53768</link.rule.ids><backlink>$$Uhttps://www.ncbi.nlm.nih.gov/pubmed/39440702$$D View this record in MEDLINE/PubMed$$Hfree_for_read</backlink></links><search><creatorcontrib>Rivera Mindt, Mónica</creatorcontrib><creatorcontrib>Arentoft, Alyssa</creatorcontrib><creatorcontrib>Calcetas, Amanda T.</creatorcontrib><creatorcontrib>Guzman, Vanessa A.</creatorcontrib><creatorcontrib>Amaza, Hannatu</creatorcontrib><creatorcontrib>Ajayi, Adeyinka</creatorcontrib><creatorcontrib>Ashford, Miriam T.</creatorcontrib><creatorcontrib>Ayo, Omobolanle</creatorcontrib><creatorcontrib>Barnes, Lisa L.</creatorcontrib><creatorcontrib>Camuy, Alicia</creatorcontrib><creatorcontrib>Conti, Catherine</creatorcontrib><creatorcontrib>Diaz, Adam</creatorcontrib><creatorcontrib>Easter, Bashir</creatorcontrib><creatorcontrib>Gonzalez, David J.</creatorcontrib><creatorcontrib>Dotson, Yolanda Graham</creatorcontrib><creatorcontrib>Hoang, Isabella</creatorcontrib><creatorcontrib>Germano, Kaori Kubo</creatorcontrib><creatorcontrib>Maestre, Gladys E.</creatorcontrib><creatorcontrib>Magaña, Fabiola</creatorcontrib><creatorcontrib>Meyer, Oanh L.</creatorcontrib><creatorcontrib>Miller, Melanie J.</creatorcontrib><creatorcontrib>Nosheny, Rachel</creatorcontrib><creatorcontrib>Park, Van M. Ta</creatorcontrib><creatorcontrib>Parkins, Shaniya</creatorcontrib><creatorcontrib>Thomas, Lisa Renier</creatorcontrib><creatorcontrib>Strong, Joe</creatorcontrib><creatorcontrib>Talavera, Sandra</creatorcontrib><creatorcontrib>Verney, Steven P.</creatorcontrib><creatorcontrib>Weisensel, Trinity</creatorcontrib><creatorcontrib>Weiner, Michael W.</creatorcontrib><creatorcontrib>Okonkwo, Ozioma C.</creatorcontrib><creatorcontrib>Alzheimer's Disease Neuroimaging Initiative</creatorcontrib><creatorcontrib>the Alzheimer's Disease Neuroimaging Initiative</creatorcontrib><title>The Alzheimer's Disease Neuroimaging Initiative‐4 (ADNI‐4) Engagement Core: A culturally informed, community‐engaged research (CI‐CER) model to advance brain health equity</title><title>Alzheimer's & dementia</title><addtitle>Alzheimers Dement</addtitle><description>INTRODUCTION
The Alzheimer's Disease Neuroimaging Initiative‐4 (ADNI‐4) Engagement Core was launched to advance Alzheimer's disease (AD) and AD‐related dementia (ADRD) health equity research in underrepresented populations (URPs). We describe our evidence‐based, scalable culturally informed, community‐engaged research (CI‐CER) model and demonstrate its preliminary success in increasing URP enrollment.
METHODS
URPs include ethnoculturally minoritized, lower education (≤ 12 years), and rural populations. The CI‐CER model includes: (1) culturally informed methodology (e.g., less restrictive inclusion/exclusion criteria, sociocultural measures, financial compensation, results disclosure, Spanish Language Capacity Workgroup) and (2) inclusive engagement methods (e.g., the Engagement Core team; Hub Sites; Community–Science Partnership Board).
RESULTS
As of April 2024, 60% of ADNI‐4 new in‐clinic enrollees were from ethnoculturally or educationally URPs. This exceeds ADNI‐4's ≥ 50% URP representation goal for new enrollees but may not represent final enrollment.
DISCUSSION
Findings show a CI‐CER model increases URP enrollment in AD/ADRD clinical research and has important implications for clinical trials to advance health equity.
Highlights
The Alzheimer's Disease Neuroimaging Initiative‐4 (ADNI‐4) uses a culturally informed, community‐engaged research (CI‐CER) approach.
The CI‐CER approach is scalable and sustainable for broad, multisite implementation.
ADNI‐4 is currently exceeding its inclusion goals for underrepresented populations.</description><subject>Aged</subject><subject>Alzheimer Disease - diagnostic imaging</subject><subject>Alzheimer Disease - ethnology</subject><subject>Alzheimer's disease</subject><subject>Brain - diagnostic imaging</subject><subject>Brain - pathology</subject><subject>cognitive aging</subject><subject>Community-Based Participatory Research</subject><subject>community‐engaged research</subject><subject>cultural humility</subject><subject>dementia</subject><subject>diversity</subject><subject>external validity</subject><subject>Female</subject><subject>generalizability</subject><subject>health disparities</subject><subject>Health Equity</subject><subject>Humans</subject><subject>inclusion science</subject><subject>inclusive participation</subject><subject>Male</subject><subject>Neuroimaging</subject><subject>underrepresented populations</subject><issn>1552-5260</issn><issn>1552-5279</issn><issn>1552-5279</issn><fulltext>true</fulltext><rsrctype>article</rsrctype><creationdate>2024</creationdate><recordtype>article</recordtype><sourceid>24P</sourceid><sourceid>EIF</sourceid><recordid>eNp1kdFu0zAUhiMEYmNwwQsg39FKdLMdO6m5QVFWoFI1JNQrbizHOWmMnHizk6Luao-wd-GNeBLcdVRwwZWP5O98x8d_krwm-JxgTC-UvT0njDL6JDklnNMZp7l4eqwzfJK8COE7xgzPCX-enKSCMZxjepr8XLeACnvbgunAvw3o0gRQAdAVjN6ZTm1Mv0HL3gxGDWYLv-7uGZoUl1fLfTVFi36jNtBBP6DSeXiPCqRHO4xeWbtDpm-c76B-h7TrujFadrENHnpq5CGO8rpFk3JvKxdfp6hzNVg0OKTqreo1oMor06MWlB1aBDdjVLxMnjXKBnj1eJ4l64-Ldfl5tvryaVkWq5lOcUZndVNhqrkWtWI8z-cpp_VcUSYwVrwRkOIqn_MmJxUnRDGaQeSbmrKcCZ3x9Cz5cNBej1XcQccd41by2sdf8TvplJH_3vSmlRu3lYRkWc5TGg2TR4N3NyOEQXYmaLBW9eDGIFNCRE5TIUREpwdUexeCh-Y4h2C5D1nGkOVDyJF98_fDjuSfVCNwcQB-GAu7_5tksfp2UP4GPfC2fg</recordid><startdate>202412</startdate><enddate>202412</enddate><creator>Rivera Mindt, Mónica</creator><creator>Arentoft, Alyssa</creator><creator>Calcetas, Amanda T.</creator><creator>Guzman, Vanessa A.</creator><creator>Amaza, Hannatu</creator><creator>Ajayi, Adeyinka</creator><creator>Ashford, Miriam T.</creator><creator>Ayo, Omobolanle</creator><creator>Barnes, Lisa L.</creator><creator>Camuy, Alicia</creator><creator>Conti, Catherine</creator><creator>Diaz, Adam</creator><creator>Easter, Bashir</creator><creator>Gonzalez, David J.</creator><creator>Dotson, Yolanda Graham</creator><creator>Hoang, Isabella</creator><creator>Germano, Kaori Kubo</creator><creator>Maestre, Gladys E.</creator><creator>Magaña, Fabiola</creator><creator>Meyer, Oanh L.</creator><creator>Miller, Melanie J.</creator><creator>Nosheny, Rachel</creator><creator>Park, Van M. Ta</creator><creator>Parkins, Shaniya</creator><creator>Thomas, Lisa Renier</creator><creator>Strong, Joe</creator><creator>Talavera, Sandra</creator><creator>Verney, Steven P.</creator><creator>Weisensel, Trinity</creator><creator>Weiner, Michael W.</creator><creator>Okonkwo, Ozioma C.</creator><general>John Wiley and Sons Inc</general><scope>24P</scope><scope>CGR</scope><scope>CUY</scope><scope>CVF</scope><scope>ECM</scope><scope>EIF</scope><scope>NPM</scope><scope>AAYXX</scope><scope>CITATION</scope><scope>7X8</scope><scope>5PM</scope></search><sort><creationdate>202412</creationdate><title>The Alzheimer's Disease Neuroimaging Initiative‐4 (ADNI‐4) Engagement Core: A culturally informed, community‐engaged research (CI‐CER) model to advance brain health equity</title><author>Rivera Mindt, Mónica ; Arentoft, Alyssa ; Calcetas, Amanda T. ; Guzman, Vanessa A. ; Amaza, Hannatu ; Ajayi, Adeyinka ; Ashford, Miriam T. ; Ayo, Omobolanle ; Barnes, Lisa L. ; Camuy, Alicia ; Conti, Catherine ; Diaz, Adam ; Easter, Bashir ; Gonzalez, David J. ; Dotson, Yolanda Graham ; Hoang, Isabella ; Germano, Kaori Kubo ; Maestre, Gladys E. ; Magaña, Fabiola ; Meyer, Oanh L. ; Miller, Melanie J. ; Nosheny, Rachel ; Park, Van M. Ta ; Parkins, Shaniya ; Thomas, Lisa Renier ; Strong, Joe ; Talavera, Sandra ; Verney, Steven P. ; Weisensel, Trinity ; Weiner, Michael W. ; Okonkwo, Ozioma C.</author></sort><facets><frbrtype>5</frbrtype><frbrgroupid>cdi_FETCH-LOGICAL-c3062-dfb02c5c9da45778352d8a24900a5f9e30b785f71b511a426eb02fd24749c653</frbrgroupid><rsrctype>articles</rsrctype><prefilter>articles</prefilter><language>eng</language><creationdate>2024</creationdate><topic>Aged</topic><topic>Alzheimer Disease - diagnostic imaging</topic><topic>Alzheimer Disease - ethnology</topic><topic>Alzheimer's disease</topic><topic>Brain - diagnostic imaging</topic><topic>Brain - pathology</topic><topic>cognitive aging</topic><topic>Community-Based Participatory Research</topic><topic>community‐engaged research</topic><topic>cultural humility</topic><topic>dementia</topic><topic>diversity</topic><topic>external validity</topic><topic>Female</topic><topic>generalizability</topic><topic>health disparities</topic><topic>Health Equity</topic><topic>Humans</topic><topic>inclusion science</topic><topic>inclusive participation</topic><topic>Male</topic><topic>Neuroimaging</topic><topic>underrepresented populations</topic><toplevel>peer_reviewed</toplevel><toplevel>online_resources</toplevel><creatorcontrib>Rivera Mindt, Mónica</creatorcontrib><creatorcontrib>Arentoft, Alyssa</creatorcontrib><creatorcontrib>Calcetas, Amanda T.</creatorcontrib><creatorcontrib>Guzman, Vanessa A.</creatorcontrib><creatorcontrib>Amaza, Hannatu</creatorcontrib><creatorcontrib>Ajayi, Adeyinka</creatorcontrib><creatorcontrib>Ashford, Miriam T.</creatorcontrib><creatorcontrib>Ayo, Omobolanle</creatorcontrib><creatorcontrib>Barnes, Lisa L.</creatorcontrib><creatorcontrib>Camuy, Alicia</creatorcontrib><creatorcontrib>Conti, Catherine</creatorcontrib><creatorcontrib>Diaz, Adam</creatorcontrib><creatorcontrib>Easter, Bashir</creatorcontrib><creatorcontrib>Gonzalez, David J.</creatorcontrib><creatorcontrib>Dotson, Yolanda Graham</creatorcontrib><creatorcontrib>Hoang, Isabella</creatorcontrib><creatorcontrib>Germano, Kaori Kubo</creatorcontrib><creatorcontrib>Maestre, Gladys E.</creatorcontrib><creatorcontrib>Magaña, Fabiola</creatorcontrib><creatorcontrib>Meyer, Oanh L.</creatorcontrib><creatorcontrib>Miller, Melanie J.</creatorcontrib><creatorcontrib>Nosheny, Rachel</creatorcontrib><creatorcontrib>Park, Van M. Ta</creatorcontrib><creatorcontrib>Parkins, Shaniya</creatorcontrib><creatorcontrib>Thomas, Lisa Renier</creatorcontrib><creatorcontrib>Strong, Joe</creatorcontrib><creatorcontrib>Talavera, Sandra</creatorcontrib><creatorcontrib>Verney, Steven P.</creatorcontrib><creatorcontrib>Weisensel, Trinity</creatorcontrib><creatorcontrib>Weiner, Michael W.</creatorcontrib><creatorcontrib>Okonkwo, Ozioma C.</creatorcontrib><creatorcontrib>Alzheimer's Disease Neuroimaging Initiative</creatorcontrib><creatorcontrib>the Alzheimer's Disease Neuroimaging Initiative</creatorcontrib><collection>Wiley Online Library Open Access</collection><collection>Medline</collection><collection>MEDLINE</collection><collection>MEDLINE (Ovid)</collection><collection>MEDLINE</collection><collection>MEDLINE</collection><collection>PubMed</collection><collection>CrossRef</collection><collection>MEDLINE - Academic</collection><collection>PubMed Central (Full Participant titles)</collection><jtitle>Alzheimer's & dementia</jtitle></facets><delivery><delcategory>Remote Search Resource</delcategory><fulltext>fulltext</fulltext></delivery><addata><au>Rivera Mindt, Mónica</au><au>Arentoft, Alyssa</au><au>Calcetas, Amanda T.</au><au>Guzman, Vanessa A.</au><au>Amaza, Hannatu</au><au>Ajayi, Adeyinka</au><au>Ashford, Miriam T.</au><au>Ayo, Omobolanle</au><au>Barnes, Lisa L.</au><au>Camuy, Alicia</au><au>Conti, Catherine</au><au>Diaz, Adam</au><au>Easter, Bashir</au><au>Gonzalez, David J.</au><au>Dotson, Yolanda Graham</au><au>Hoang, Isabella</au><au>Germano, Kaori Kubo</au><au>Maestre, Gladys E.</au><au>Magaña, Fabiola</au><au>Meyer, Oanh L.</au><au>Miller, Melanie J.</au><au>Nosheny, Rachel</au><au>Park, Van M. Ta</au><au>Parkins, Shaniya</au><au>Thomas, Lisa Renier</au><au>Strong, Joe</au><au>Talavera, Sandra</au><au>Verney, Steven P.</au><au>Weisensel, Trinity</au><au>Weiner, Michael W.</au><au>Okonkwo, Ozioma C.</au><aucorp>Alzheimer's Disease Neuroimaging Initiative</aucorp><aucorp>the Alzheimer's Disease Neuroimaging Initiative</aucorp><format>journal</format><genre>article</genre><ristype>JOUR</ristype><atitle>The Alzheimer's Disease Neuroimaging Initiative‐4 (ADNI‐4) Engagement Core: A culturally informed, community‐engaged research (CI‐CER) model to advance brain health equity</atitle><jtitle>Alzheimer's & dementia</jtitle><addtitle>Alzheimers Dement</addtitle><date>2024-12</date><risdate>2024</risdate><volume>20</volume><issue>12</issue><spage>8279</spage><epage>8293</epage><pages>8279-8293</pages><issn>1552-5260</issn><issn>1552-5279</issn><eissn>1552-5279</eissn><abstract>INTRODUCTION
The Alzheimer's Disease Neuroimaging Initiative‐4 (ADNI‐4) Engagement Core was launched to advance Alzheimer's disease (AD) and AD‐related dementia (ADRD) health equity research in underrepresented populations (URPs). We describe our evidence‐based, scalable culturally informed, community‐engaged research (CI‐CER) model and demonstrate its preliminary success in increasing URP enrollment.
METHODS
URPs include ethnoculturally minoritized, lower education (≤ 12 years), and rural populations. The CI‐CER model includes: (1) culturally informed methodology (e.g., less restrictive inclusion/exclusion criteria, sociocultural measures, financial compensation, results disclosure, Spanish Language Capacity Workgroup) and (2) inclusive engagement methods (e.g., the Engagement Core team; Hub Sites; Community–Science Partnership Board).
RESULTS
As of April 2024, 60% of ADNI‐4 new in‐clinic enrollees were from ethnoculturally or educationally URPs. This exceeds ADNI‐4's ≥ 50% URP representation goal for new enrollees but may not represent final enrollment.
DISCUSSION
Findings show a CI‐CER model increases URP enrollment in AD/ADRD clinical research and has important implications for clinical trials to advance health equity.
Highlights
The Alzheimer's Disease Neuroimaging Initiative‐4 (ADNI‐4) uses a culturally informed, community‐engaged research (CI‐CER) approach.
The CI‐CER approach is scalable and sustainable for broad, multisite implementation.
ADNI‐4 is currently exceeding its inclusion goals for underrepresented populations.</abstract><cop>United States</cop><pub>John Wiley and Sons Inc</pub><pmid>39440702</pmid><doi>10.1002/alz.14242</doi><tpages>15</tpages><oa>free_for_read</oa></addata></record> |
| fulltext | fulltext |
| identifier | ISSN: 1552-5260 |
| ispartof | Alzheimer's & dementia, 2024-12, Vol.20 (12), p.8279-8293 |
| issn | 1552-5260 1552-5279 1552-5279 |
| language | eng |
| recordid | cdi_pubmedcentral_primary_oai_pubmedcentral_nih_gov_11667532 |
| source | MEDLINE; Wiley Online Library Open Access; Wiley Online Library Journals Frontfile Complete; PubMed Central; PubMed Central Open Access |
| subjects | Aged Alzheimer Disease - diagnostic imaging Alzheimer Disease - ethnology Alzheimer's disease Brain - diagnostic imaging Brain - pathology cognitive aging Community-Based Participatory Research community‐engaged research cultural humility dementia diversity external validity Female generalizability health disparities Health Equity Humans inclusion science inclusive participation Male Neuroimaging underrepresented populations |
| title | The Alzheimer's Disease Neuroimaging Initiative‐4 (ADNI‐4) Engagement Core: A culturally informed, community‐engaged research (CI‐CER) model to advance brain health equity |
| url | https://sfx.bib-bvb.de/sfx_tum?ctx_ver=Z39.88-2004&ctx_enc=info:ofi/enc:UTF-8&ctx_tim=2025-01-30T02%3A31%3A31IST&url_ver=Z39.88-2004&url_ctx_fmt=infofi/fmt:kev:mtx:ctx&rfr_id=info:sid/primo.exlibrisgroup.com:primo3-Article-proquest_pubme&rft_val_fmt=info:ofi/fmt:kev:mtx:journal&rft.genre=article&rft.atitle=The%20Alzheimer's%20Disease%20Neuroimaging%20Initiative%E2%80%904%20(ADNI%E2%80%904)%20Engagement%20Core:%20A%20culturally%20informed,%20community%E2%80%90engaged%20research%20(CI%E2%80%90CER)%20model%20to%20advance%20brain%20health%20equity&rft.jtitle=Alzheimer's%20&%20dementia&rft.au=Rivera%20Mindt,%20M%C3%B3nica&rft.aucorp=Alzheimer's%20Disease%20Neuroimaging%20Initiative&rft.date=2024-12&rft.volume=20&rft.issue=12&rft.spage=8279&rft.epage=8293&rft.pages=8279-8293&rft.issn=1552-5260&rft.eissn=1552-5279&rft_id=info:doi/10.1002/alz.14242&rft_dat=%3Cproquest_pubme%3E3119723999%3C/proquest_pubme%3E%3Curl%3E%3C/url%3E&disable_directlink=true&sfx.directlink=off&sfx.report_link=0&rft_id=info:oai/&rft_pqid=3119723999&rft_id=info:pmid/39440702&rfr_iscdi=true |